A Way Forward: The Translational Impacts of World Trade Center Health Program Research

In 2017 the National Institute for Occupational Safety and Health (NIOSH) contracted with the RAND Corporation to conduct a four-year study of the World Trade Center (WTC) Health Program’s research portfolio and its translational impact. The report was released on October 25, 2021. A summary follows.

Background

The WTC Health Program is a federally mandated program that is administered by NIOSH to provide high-quality, compassionate healthcare to those with qualifying health conditions related to the 9/11 attacks and aftermath. The Program provides medical monitoring and treatment for eligible emergency responders, recovery and cleanup workers, and volunteers who helped at the World Trade Center, the Pentagon, and the crash site near Shanksville, Pennsylvania. The Program also provides initial health evaluations for eligible survivors, and medical monitoring and treatment for those who have qualifying health conditions.

As a part of the WTC Health Program, NIOSH initiated a Research to Care (R2C) approach aimed at turning scientific observations into healthcare interventions that improve and enhance the health and well-being of the 9/11 population. This is often referred to as research translation. This model also includes a community of practice approach designed to bring together practitioners, stakeholders, and researchers to move evidence-based research into practice. Together, these efforts serve as both an information resource and a research platform where WTC Health Program members can connect and collaborate with researchers and practitioners bringing forth ideas for research and sharing in structured community involvement opportunities.

The RAND report, Translational Impact of World Trade Center Health Program Research, examines the WTC Health Program research portfolio and its translational impact. The RAND study addressed four research questions:

(1) What topics and questions have been addressed in WTC health-related research?

(2) To what extent is WTC health-related research translational?

(3) What are the facilitators of and barriers to successful translation of WTC health-related research?

(4) To what extent has WTC health-related research had impact?

Methods

RAND systematically reviewed WTC Health Program research published in the peer reviewed literature. Using the NIEHS translational research framework, RAND researchers traced and assessed the research and described its impact. The NIEHS approach builds upon translational frameworks to describe how ideas and knowledge move from one type of biomedical evidence to another. In conducting this research, RAND used information from several diverse data sources, including insights gleaned from several structured focus groups and stakeholder interviews held in 2019 and 2020. Resulting data demonstrate how research has accrued over time, informed care, and guided policy and planning.

Findings

What topics and questions have been addressed in WTC health-related research?

• WTC health-related research addresses a wide range of health conditions and is balanced across Member populations.
• There is a high concentration of research addressing fundamental questions about the health effects of 9/11 and a lower concentration of research on health care interventions for affected populations.

What are the facilitators of and barriers to translation of WTC health-related research?

• Facilitators of research translation include a focused mission to improve care through research, research infrastructure, and communication and dissemination of findings. Barriers to research translation include methodological limitations; fragmentation of the health care system; funding constraints; variable definitions of translation; and misaligned expectations about research.

To what extent is WTC health-related research translational?

• Program leaders, researchers, clinicians, and Members understand the fundamentals of translation and can describe, in their own words, how research is used. However, almost all stakeholders struggled to give a comprehensive definition.
• The Program has a strong record of documenting and disseminating Program-funded research, but the range of stakeholder preferences for receiving information about WTC health-related research is broad and presents challenges.

To what extent has WTC health-related research had impact?

• Program research is used in decisions about care, planning, and policy.
• Stakeholders want to know how they can contribute to maximizing impacts of research. Some stakeholders may need information and guidance to support their involvement in Program policy, planning, and research.

Recommendations

The report offered the following four recommendations to reinforce and strengthen the translation impacts of WTCHP research.

1.The WTC Health Program should further develop existing research infrastructure and processes for conducting timely, objective, continuous reviews of the Program research portfolio.

NIOSH Response: The WTC Health Program has initiated efforts to identify, collect and evaluate WTC-related research. Recent examples of these efforts are:

• Continuous development and maintenance of the research compendium that documents the WTC research portfolio.
• Recent publications in the peer-reviewed literature by Program staff documenting reviews. [1-5]
• A systematic review of the research on young adults exposed to 9/11 as children (< 21 years of age) expected in FY 2022.

2.The WTC Health Program should continue to gather input from stakeholders on a novel translational research framework.

NIOSH Response: The WTC Health Program is committed to continued dialogue with community members, clinicians, scientists, Program membership, and others. Previous experience dictates that information gained by the Program from interactions with the WTC community often initiates or refines Program action. Recent examples of actions include:

• The WTC Health Program led a workshop on aging and cognitive impairment in the 9/11-exposed population based on emerging research suggesting a possible increased risk of developing mild cognitive impairment. Workshop participants included scientists actively involved in health-effects research of 9/11-exposed persons and other at-risk populations. [2]
• The Federal Register Notification (FRN) soliciting public comment on WTC Survivor research was published on July 22, 2021.
• The research announcement for FY 2022 research project proposals specifically for survivors, including persons exposed as children, published September 3, 2021. This solicitation incorporated input from community members who recommended a separate solicitation for survivor research in efforts to improve health research among community members potentially underrepresented by responder research, including minority groups and persons exposed as children.
• The WTC Health Program will ensure that new outreach and education contracts address services for persons that may appear underrepresented, based on existing enrollment including persons exposed to 9/11 as children. This action stems from communications with community members.
• The WTC Health Program continues to assess the extramural research program and communication of findings to community members. For example, summary documents describing WTC research Application Submissions and Award Rates 2012 – 2020 were developed in response to requests made by the Survivor Steering Committee (SSC) in June 2021.
• WTC Health Program staff actively participate in several community-based meetings, such as the Responder Steering Committee, the Survivor Steering Committee, the WTC Health Program Scientific/Technical Advisory Committee (STAC) and internal meetings with Clinical Centers for Excellence and the Nationwide Provider Network regarding medical and mental health issues. These meetings provide opportunity for dialogue on current research and future needs, including the status of research translation.
• WTC Health Program staff collaborate with other WTC researchers on key projects within the research portfolio. [6]

3. The WTC Health Program should continue to improve the translational framework in four key areas: research planning, monitoring, evaluation, and communication about research impacts.

NIOSH Response: The WTC Health Program is committed to continued improvement of its research program. Many ongoing efforts have been described in the other responses. NIOSH will continue to engage with scientists, clinicians, and community members in search of effective ways of initiating, conducting, and communicating research findings.

4. The WTC Health Program should implement structured processes for stakeholder engagement in program planning, policy, and research activities.

NIOSH Response: The WTC Health Program is currently exploring efforts to improve communications based on Program funded research, such as improved use of social media platforms and science blogs, targeted research workshops and meetings, and solicitation of public comment on a variety of research topics. In-person communications have been difficult given recent events. It is anticipated that communication efforts will substantially increase as the pandemic subsides. *

 The report concludes:

“More than twenty years after the attacks on 9/11, the Program continues to carry out its focused research mission: to improve health care and outcomes of its Members. In support of this mission, the Program engages in ongoing planning activities that are grounded in rigorous assessments of existing research and future needs.”

Robert D. Daniels, PhD, CHP, is Associate Director for Science in the World Trade Center Health Program.

Travis Kubale, PhD, is the Associate Director, Research Planning & Care Integration in the World Trade Center Health Program. 

*Text edited on 10/26/21 to include the NIOSH response to the recommendations.

References

1.Daniels RD, Carreón T, Bilics JA, Reissman DB, Howard J [2021a]. The world trade center health program: Petitions for adding qualifying health conditions. American journal of industrial medicine, Vol. 64, No. 10, pp. 885-892.

2. Daniels RD, Clouston SAP, Hall CB, Anderson KR, Bennett DA, Bromet EJ, Calvert GM, Carreón T, Dekosky ST, Diminich ED, Finch CE, Gandy S, Kreisl WC, Kritikos M, Kubale TL, Mielke MM, Peskind ER, Raskind MA, Richards M, Sano M, Santiago-Colón A, Sloan RP, Spiro A, Vasdev N, Luft BJ, Reissman DB [2021b]. A workshop on cognitive aging and impairment in the 9/11-exposed population. International journal of environmental research and public health, Vol. 18, No. 2, Jan 14, p. 681.

3. Daniels RD, Kubale TL, Reissman DB, Howard J [2021c]. The world trade center health program: Twenty years of health effects research. American journal of industrial medicine, Vol. 64, No. 10, pp. 797-802.

4.Santiago-Colón A, Daniels R, Reissman D, Anderson K, Calvert G, Caplan A, Carreón T, Katruska A, Kubale T, Liu R, Nembhard R, Robison WA, Yiin J, Howard J [2020]. World trade center health program: First decade of research. Int. J. Environ. Res. Public Health 2020, 17(19), 7290;, Vol. 17, No. 19, Received: 9 September 2020 / Revised: 30 September 2020 / Accepted: 2 October 2020 / Published: 6 October 2020, p. 7290.

5. Azofeifa A, Martin GR, Santiago-Colon A, Reissman DB, Howard J [2021]. World trade center health program – united states, 2012-2020. MMWR Surveill Summ, Vol. 70, No. 4, Sep 10, pp. 1-21.

6. Webber MP, Singh A, Zeig-Owens R, Salako J, Skerker M, Hall CB, Goldfarb DG, Jaber N, Daniels RD, Prezant DJ [2021]. Cancer incidence in world trade center-exposed and non-exposed male firefighters, as compared with the us adult male population: 2001–2016. Occupational and Environmental Medicine, Vol., pp. oemed-2021-107570.